Pulmonary Fibrosis / ILD
🫁 Respiratory
Force Field Fact Sheet · Pulmonary Fibrosis / ILD

Build Your Force Field for Pulmonary Fibrosis / ILD

A one-page primer with sixteen squares of essential knowledge, skills, and supports.

Tell Me So I Can Understand

If you ever need to explain your Pulmonary Fibrosis / ILD in 30 seconds, start with this.

“I have pulmonary fibrosis — scarring in my lungs that makes it harder to breathe. I take antifibrotic medication, sometimes use oxygen, and watch carefully for any infection that could make my breathing worse. I wanted you to know because shortness of breath at rest or a sudden change in my breathing is an emergency — call 911.”

Four-beat structure: name it · explain it in one plain sentence · why you’re sharing · what you want them to do. Pocket versions at the bottom.

🎯Three Content Types · One Force Field

Every square belongs to one of three content types — not three levels you climb. Track personal progress in your Course and Skills Lab.

📘 Learn It Content type

Concepts to absorb.

Concepts
→

🛠 Live It Content type

Daily skills and habits.

SkillsActions
→

🛡️Your Force Field — 16 Squares

Deeper detail lives in the Prepared Patient Pulmonary Fibrosis / ILD course.

Learn ItKnowledge & Self-UnderstandingSquares 1–5
1🫁

What Pulmonary Fibrosis Is

Scarring in lung tissue makes it stiff. Less air exchange. Progressive in many.

Learn It
2💊

Why Antifibrotics Matter

Pirfenidone and nintedanib slow scarring. They don't reverse it but they extend lung function.

Learn It
3🚨

Spot the Red Flags

Severe SOB at rest · cough up blood · chest pain · bluish lips — 911.

Learn It
4⚡

Infection Triggers

Cold, flu, COVID, pneumonia. Any infection can trigger an exacerbation.

Learn It
5📖

Numbers That Matter

FVC, DLCO, 6-minute walk. Trended on schedule.

Learn It
Live ItDaily Skills & System LiteracySquares 6–13
6💊

Antifibrotic Daily

Take with food. GI side effects common but manageable.

Live It
7🩺

Pulse Ox at Home

Drop in O2 with effort is a warning sign. Log it.

Live It
8🏃

Pulmonary Rehab

Supervised exercise + education. Real outcomes data.

Live It
9📋

Make Every Visit Count

Bring oxygen log, walking distance, any new symptoms.

Live It
10🤝

Your Care Team

Pulmonologist + ILD specialist + sometimes transplant evaluation.

Live It
11📱

Telehealth

Med management works telehealth. Imaging in person.

Live It
12💳

Insurance & Cost

Antifibrotics are expensive — manufacturer assistance programs exist.

Live It
13⚖️

Transplant Eligibility

Some patients are candidates. Conversation worth having early.

Live It
Share ItAdvocacy & AmbassadorshipSquares 14–16
14🎓

Teach & Mentor

Pulmonary fibrosis is isolating. Patient-to-patient support helps.

15📣

Advocate

Research funding for ILD is small. Patient voices push it forward.

16🔬

Research & Trials

Combination therapies, biomarker studies, lung regeneration.

How to Talk to Your Care Team

Three things to learn before you actually need them.

Workflow lives in the Prepared Visit Tool. Trackers in your Course.

Which door do I use?

ILD is about preserving lung function and catching exacerbations fast.

1

Handle at home

  • Stable baseline shortness of breath with effort
  • Mild dry cough
  • Following antifibrotic schedule

Log it. Stay on meds and pulmonary rehab if prescribed.

2

Call the office / message the portal

  • Worsening cough or new wet cough
  • Mild fever
  • Running low on antifibrotic or oxygen supplies
  • New medication from another doctor (interaction risk)

Same day. ILD exacerbations move fast.

3

Urgent / Acute care

  • Fever ≥101°F
  • Sputum that’s green/yellow/bloody
  • Marked decrease in exercise tolerance
  • New ankle swelling

Urgent care. Bring your med list.

4

ER NOW / call 911

  • Severe shortness of breath at rest
  • Chest pain
  • Lips or fingertips bluish
  • Cough up significant blood
  • Confusion

Call 911. Tell them you have ILD — it changes their plan.

How to describe a new symptom in 30 seconds

1
What is it?

Plain words.

2
How bad?

0-10.

3
When did it start?

Time + what you were doing.

4
What made it worse?

Movement · food · meds.

5
What helped?

Even a little.

6
What else was new?

Fever · med · supplement · stress. The forgotten detail often shifts the diagnosis.

Worked example — the Pulmonary Fibrosis / ILD version

“Shortness of breath worsened over 5 days, a 7, worse climbing stairs, started after I caught a cold from my grandchild, sitting helps, and I haven’t had a fever.”

Questions worth asking

Four for every patient, every condition, every visit:

  1. “Could this be a side effect of one of my medications, a supplement, or something else I’m doing — and should we change that?”
  2. “Would any non-drug therapy help — physical therapy, meditation, rest, ice or heat?”
  3. “If I can’t afford this medication or this test, can we talk about samples, alternatives, or a social worker who can help?”
  4. “What should I be watching for between now and my next visit — and when do I handle it myself, when do I call your office, when do I go to urgent care, and when do I go to the ER?”

Questions specifically for Pulmonary Fibrosis / ILD:

  1. “Am I a candidate for antifibrotic therapy (pirfenidone, nintedanib)?”
  2. “Should I have pulmonary rehab or be referred to a transplant program?”
  3. “What’s my FVC and DLCO trend?”
  4. “Do I need home oxygen at rest, with activity, or at night?”
  5. “What vaccines protect me — flu, pneumococcal, RSV, COVID?”
What to Tell People in Your Life

Three pocket versions of your “Tell Me So I Can Understand.”

Same four beats: name it · explain it · why you’re sharing · what you want them to do.

💼

For a coworker

“I have pulmonary fibrosis. I may need to pause to breathe. If you’re sick — cold, flu, COVID — please give me space; infections hit me much harder.”
👫

For a partner

“I have pulmonary fibrosis. My antifibrotic is [name · dose]. My oxygen (if any) is in [where]. If my breathing changes suddenly at rest, call 911. Bring my med list to any ER visit.”
🚑

For a first responder

“I have pulmonary fibrosis / ILD. Antifibrotic: [pirfenidone/nintedanib, dose]. [On/Not on] home oxygen at [L/min]. Allergies: [allergies]. Pulmonologist: [name · phone].”

📋 Want this card built for you — with your medications, allergies, and care team already filled in? Take the Prepared Patient · Pulmonary Fibrosis / ILD course and we’ll build you a personalized Emergency Card — print-ready, phone-ready, wallet-sized.